I have a slot in AMG 509 and am curious about other HU members experiences with this trial so far….. How bad was CRS? any other side effects you experienced and for how long? How effective for you was this trial? PSA reduction? Reduction on scans? How long did you continue with treatment?
Thanks!
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Farmhand
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I am about halfway through my treatment with amg 509 (Xaluritamig).
The treatment started with a dose of 0.1 mg and after four weekly sessions, I have reached 1.5 mg. Now, every two weeks I receive a dose.
I had a lot of pain in my legs, shoulder muscles and stomach. I was prescribed a fentanyl patch (low dose) and dexamethasone.
A week ago, the oncologist removed my dexa because I no longer experience pain, the pain has completely disappeared.
The soft tissue tumors have been reduced by 63% (according to RT PSMA), the 2 bone tumors (one in a rib and another in the pelvis, are stable). According to the study, I would be, for now, with the patients with static disease and then I can continue the clinical trial without further problems.
PSA has decreased by 85% (from 4.4 to 0.64). I am about to reach PSA90 which, according to the study, is associated with 90% to 100% survival
Words from my oncologist: "I am very happy with how the clinical trial is going with you".
In short, I spent about 3 weeks with pain that subsided with dexa and fentanyl. When I started receiving a dose every 2 weeks the pain disappeared.
thank you so very much for the response! I find out in a few days whether or not I am accepted to the trial and will also receive the higher dose, which is 1.5 but they will work up to it in four steps.
That is exactly the type of information I was looking for. My PSA is 155 and ALP is 430, so, heavier tumor burden than you had and so wondering if side effects might be more extreme (if it is a successful treatment)…. Large numbers of tumor cells, dying off quickly could cause more inflammation, etc.
it sounds as though within the first 2 to 3 weeks of treatment, it was evident whether or not it was going to help you?
The clinical trial seems that prefers pacients treated with chemo.
I asked my oncologist that my pain was due that the immuno system was working hard and was releasing cytokines. His answer was that no necessarily. But I think that if there's that kind of inflamation and pain is that something is working inside.
I forgot to tell you that after the first dose I stayed in the hospital for 24h, just to prevent an exaggerated response of cytokines.
45% the pacients that achieve tha highest dose have a PSA 90%.
I hope the side effects are not too serious for you.
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